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Thread: Update on my syncopes (fainting/passing out) or whatever you want to call them!!

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    Unhappy Update on my syncopes (fainting/passing out) or whatever you want to call them!!

    Well there still happening!! But I can feel them coming on so I have not hurt myself lately!!
    Oh the arm is slowly healing (for those who don't know I passed out, hit my arm off a glass vase in the tub that needed 60 staples, had glass left in the wound for 2 weeks until it got infected, needed surgery to remove the 5 pieces that were left in), still painful in my elbow (not sure if I will ever believe they got all the glass out) and I'm going to have one heck of a nasty scar!! The rest of my scars (chin and eyebrow) are healing nicely.
    I seen a cardiologist who ordered an echo and a 30 day event recorder. I have had many syncopes recorded on this. I have since heard that I do have an arrythmia (some kind of tachycardia) during these episodes. My heart is running between 160 to 210 beats a min during these. I still have the recorder until the end of the month. Cardiology wants to see me after my tilt table test (which they said will probably be neg so not sure why they are putting me through it, they can just go off the recorder readings) to discuss what course of action needs to be taken. I have been told I will likely either need an abulation SP? (surgery to correct an electrical pathway) drugs or a defibulator depending on where the arrythmia is occuring. So I'm relieved to know they have found something. I just need my life back. I can't go back to work or drive until this is fixed or stable and that is driving me crazy. I have also developed a bit of a social phobia because I'm afraid of passing out while by myself at a mall!! I see the Cardiologist April 19th.

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    Well I am going to keep my fingers crossed for you! It is funny that you mention a social phobia. I have become really scared of public places and traffic makes me insane (thankfully I can't drive now but it still scares the fire out of me!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

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    Maybe that's common for those of us still adjusting to the Lupus. I also prefer to stay home. If it weren't for my son and the need for groceries, I probably wouldn't go out much at all. It's frightening to be out in public and suddenly feel so weak you can't stand. It's embarrassing to try to count out cash and have your hands shake so bad that it's nearly impossible. Today I literally wobbled into the woman in front of me as I was putting groceries on the counter -- I've been so dizzy. I'm still training my son to help me when I'm finally too weak to make it out of the store. He's doing much better! But I get sweaty and I'm swollen and my makeup runs. No wonder we don't want to go out! After years of having some control of our bodies, suddenly we are totally at their random mercy and worse yet, it's so public! I was trying on sundresses today and couldn't escape that dressing room fast enough! My stomach is so swollen I looked pregnant. It was horrifying! I'm hoping that as I transfer over to this new med and the prednisone goes down, so will the swelling. But it is definitely hard to be out in the community when you never know what's going to happen next.

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    Colleen,

    Forgive me if I'm bringing up something that has already been discussed, my memory is not what it used to be. Have they discussed the possibility of POTS (Postural Orthostatic Tachycardia Syndrome) with you? You mentioned the Tilt Table test which is used in diagnosing that. Also, your heart rate is about what my daughter's is when she has her episodes of near Syncope - she hardly ever passes out anymore - comes very close though. Do you know if your blood pressure drops when you have these episodes? I don't think that the recorder catches that if memory serves me correctly. Anyway, like I said if this has already been brought up, sorry, heck I may have brought it up! LOL (((HUGS)))
    Lauren

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    Maybe it would help tp wear a medical alert bacelet to let people know that you have these episodes of fainting. I have SVT which is a tach too. But I have never passed out felt like I might but never have. Mine is controlled with meds. If I were you do some research on the cardic abulation. I was going to have it till I found out that they are not that successful and you could develope a diff. can of arrythmia So my cardio saids if can be controled by meds you are better off then a invassive process. I told him I felt the same there are alot of good antiarrythmia drugs out there that can help. But get on the computer and research the abulation it might be right for you !

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    I don't know if you guys were talking to me or to Colleenc but I just did a quick search and the symptoms are absolutely on the nose! Wow, the things I learn on this website! What struck me immediately is that I've had vertigo and have told my mother many times, "this just isn't vertigo, it's different!" I will definitely be asking my doctor about it. Thank you so much!

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    Lauren,

    I think we may have discussed POTS before. I have looked it up. It fits a bit with my sympotms, except these syncopes are happaning even when I'm lying down and I can't make it stop if I feel one coming on and lie down before it happens. I'm not sure but with POTs it's occurs when getting up or changing position? The doc I'm seeing said he totally expects the tilt table test to be neg, but wants to do it just to make sure it's not a postural thing. The recorder has picked up some kind of tach and artrial fib. I won't know until I see him in April. I'm totally frustrated not being able to go back to work!
    I'm going to reseach POTS again.
    C

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    I know I need a medical alert bracelet, not only for the syncopes, but to list all the meds I'm on. I'm not sure what kind of tach I have and I won't know until I see him on the 19th. I have also been told there is Artrial fib happening to. The abulation scares the heck out of me. Whenever I have anything invasive it never go's right and the fact that I have to been on such high amounts of blood thinners and can't stop taking them puts me at such a great risk of complications (had a kidney biopsy that I bled out from). I may even get a second opinion before I go through with it. The good thing is they would be doing it a a major teaching hospital in Toronto, not in my hillbilly hick town!!

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    Serand,

    I'm swollen too!!!! From all the steroids I have been on in the past few months. I hate looking in a mirror, I have gained 12lbs!! UGGGHHH. I'm still OK with going out, I just don't want to pass out and hurt myself or cause a scene. Unless I need stitches or have a broken bone I won't go to the hospital after these so I sure I would have to fight with the fire dept or paramedics to not take me to the hosp. They say follow up with cardiologist, so I avoid going. I have asked my hubby to tell all his fellow firefighters to just make me comfortable and don't sent me to the hosptial if they respond to a call and it's me!! They just laugh!!! I hate not having control over these. If I could prevent them from happaning that would be great!!!

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    Quote Originally Posted by Colleenc View Post
    Lauren,

    I think we may have discussed POTS before. I have looked it up. It fits a bit with my sympotms, except these syncopes are happaning even when I'm lying down and I can't make it stop if I feel one coming on and lie down before it happens. I'm not sure but with POTs it's occurs when getting up or changing position? The doc I'm seeing said he totally expects the tilt table test to be neg, but wants to do it just to make sure it's not a postural thing. The recorder has picked up some kind of tach and artrial fib. I won't know until I see him in April. I'm totally frustrated not being able to go back to work!
    I'm going to reseach POTS again.
    C
    Colleen,
    Before my daughter got diagnosed and even now when she's REALLY bad she does still have the "dizzies" when lying down. More often though, yes, it is w/changing of position from either lying down to sitting up or standing up. Whatever it is, I hope they get it figured out & under control for you! (((HUGS)))
    Lauren

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